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I. Introduction
Since the first Patient and Family Advisory Councils (PFACs) were started in the 1980s, more than 3,000 hospitals have launched a PFAC, according to the American Hospital Association. In Massachusetts, PFACs are mandated. Yet, in 2024, nearly 50 percent of hospitals still had not adopted a PFAC, which are comprised of 5 to 15 patients and family members, who meet periodically with hospital staff to provide feedback and input on a wide range of issues. These could include improving the patient experience, increasing safety and enhancing the quality of care.
GRHealth defines a patient and family advisor: “Any role that enables patients and families to have direct input and influence on the policies, programs and practices that affect the care and services individuals and their families receive.” The PFAC impact is legendary among supporters — providing feedback and input on a wide range of issues to help improve the patient experience. Yet, there are many who still don’t embrace the value of PFACs, also known as Patient Advisory Councils (PACs).
There seems to be reluctance to including patients’ valuable viewpoints. So I set out to prove that patients can have a positive impact on the bottom-line, building a business case for PFACs.
After distributing a survey on PFACs and concluding the first phase of my research in March 2014, I decided to contact the CEOs at hospitals that don’t have a PFAC and ask why not in a second survey in November 2014. The results of both of these surveys are included in this document. I found that, not only are hospitals saving money, but they are improving safety, as well as enhancing the patient experience.
My hope is that eventually, all hospitals in the U.S. and the world are listening to the voice of the patient and the family member through a PFAC.
Table of Contents
II. The PFAC Start-up
III. Council Members
IV. The First Meeting
V. Projects
VI. PFAC Agenda Content
VII. Institution Support
VIII. Recommendations
IX. Resources
II. The PFAC Start-up
Laying the groundwork for starting a PFAC is important. Here are some suggestions.
A. Leadership Support
Leadership support for the PFAC program is critical. Without leadership backing, a PFAC program will be difficult at best and may fail. Even a grassroots movement started by staff may flounder unless they can prove to leadership that a PFAC program is in the best interest of the hospital, won’t cost money and, in fact, may even save money for the hospital.
The following questions as part of a feasibility study help gauge the level of leadership support.
Questions are answered using 1 through 5 with 1 indicating a low score and 5 indicating a high score. The top score possible is 50. The total scores reflect the following:
< 25 – Leadership needs to be more supportive before a PFAC is implemented
26-40 – Leadership is primed for a PFAC; needs more info on benefits
41-50 – Leadership is ready for PFAC implementation
If you would like to use this computer model for this task, please email me and I’ll send the Excel document, which is easy to use. (BLewis@HealthcarePX.org)
B. Making the Business Case for a PFAC
Research highlights a number of examples of where PFACs have had a financial impact on hospitals.
Vanderbilt University Medical Center
Mary Ann Peugeot, former chair of the PFAC, describes a great example that saved Vanderbilt over a half million dollars. “Vanderbilt was going to replace the recliners in the patient rooms and waiting rooms as a mass purchase. Several different ones were brought in for staff and leadership to sit in and evaluate. The PFAC was also invited to be a part of the exercise and we provided our input. The ‘favorite chair’ was rated well by staff and by all but two of the Council members. Those two were queried by our staff liaison, who was surprised that they said that chair was ‘definitely out.’ The reason: they were both diabetic and knew from experience that this recliner hit their legs in the wrong position and would not be good for anyone with that condition. Because of this one discovery, Vanderbilt abandoned that chair mass purchase and saved the medical center around $540,000. Other chairs have been replaced over the years as needed, but the input of two Council members tipped the scales in the thinking process.” (October 2014)
Longmont United Hospital
Michelle Bowman, RN at Longmont United Hospital in Colorado, a designated Planetree hospital describes a suggestion from their Community Wisdom Council (CWC). “Two of our CWC members are part of our Care Partners program, volunteers who meet a frequently admitted patient while in the hospital. They do one follow-up home visit and numerous follow-up phone calls to assist in helping the patient stay out of the hospital. Our Care Partners work in tandem with a Master Coach RN and have weekly debriefing sessions at the hospital and training to deal with challenging issues. We have dropped our readmission rate from 15 percent to 8 percent, in part, by using Care Partners which saves $30,000-$90,000 in readmission costs. (We don’t get paid by Medicare or Medicaid if a readmission occurs within 30 days of discharge if the patient returns with the same diagnosis.) In the three years we have been doing this program, we know our volunteers have prevented at least six readmissions per year. That is a big savings for our 200-bed hospital.” (October 2014)
GR Health
At GRHealth, PFAC members suggested revisions in the explanations of medications for patients in neuroscience units. As a result, medication errors dropped by 62 percent, according to Peter Buckley, MD, Interim CEO and Dean of the Medical School. GRHealth’s first PFAC launched in 1994. Today there are over 200 patients and family members who are referred to as “family faculty,” teachers who advise and participate in many aspects of the hospital’s services. (November 2014)
Dana-Farber Cancer Institute
At Dana-Farber Cancer Institute in Boston, the PFAC suggested that afternoon food carts wasted a lot of food and suggested options that decreased the amount of waste. “PFACs have had enormous impact,” stated Pat Stahl, PFAC staff liaison and manager of volunteer programs and services at Dana-Farber, which, in 1998, was one of the first hospitals to start a PFAC. (November 2014)
Stanford Hospitals and Clinics
At Stanford Hospital and Clinics, the Cystic Fibrosis PFAC worked on reducing the number of missed appointments, which wastes resources and costs the hospital money. The council found that the biggest problem was the patient’s inability to get to the hospital. They put together a package with local transportation options, which is given to each patient. The results are fewer missed appointments, saving the hospital money. (September 2014)
Here is a link to a storyboard displayed at the 2014 IHI Forum on PFACs saving their hospitals money
Children’s Hospital of the King’s Daughters
Marnie Dyer, Parent Support Coordinator at Children’s Hospital of the King’s Daughters, pointed out another advantage of PFACs – donated services and products. “Through the resources of our advisors, we are generally able to complete projects significantly under what the cost would have been. For example, we have a “NICU Wall of Fame” and through our advisors, we were able to secure a professional photographer who donated his services. Another advisor used her connections at a local high school to have a class construct the frames and donate the materials. One advisor is a creative director, and she designs many projects and gets reduced printing.” Other activities include fundraising and applying for grants. (May 2014)
C. Forgetting to Ask the PFAC
Riley Hospital
In an example where the decision not to consult with patients and family members cost a hospital money, Darla Cohen, Coordinator of Patient- and Family-Centered Care at Riley Hospital, described an incident. “The Customer Experience Department designed, developed, and implemented a Welcome Packet for all patients that did not take into account comments and suggestions made by the Family Advisory Council for our children’s hospital. As a result, thousands of dollars were wasted because no one will use the packets in their current form. Input from Family Advisory Councils will inform subsequent versions.” (April 2014)
Here’s another example that Darla described where family input was not sought in advance, resulting in an unnecessary expense. “We built a new 10-story inpatient tower and had been moving patient units in stages into the new building. Based on feedback from our advisory council and family focus groups, the surgery waiting space was located fairly close to the surgery suite area. However, it was a long, narrow room with no windows and outfitted with four televisions. When our Family Advisory Council members saw it they were appalled. The Coordinator of Patient Experience for Design and Construction happened to attend a council meeting for some other reason and was really surprised, shocked, at the extent and fervor of the negative reaction from parents. As a result, the entire space was redesigned, at great expense, to include almost all of the recommendations of the council. Reactions from families now using the space are extremely positive.” (April 2014)
D. Identifying Barriers
A survey distributed at the end of 2014 revealed the major barriers to starting a PFAC. Respondents indicated time limitations and staff as the most prevalent reasons followed by competing initiatives and no priority for why they don’t have a PFAC.
An AHRQ document, Working with Patients and Families as Advisors, identifies several challenges for hospitals including resources, administrative barriers that view the cost only and not the benefit, clinician and patients views that might doubt the value.
http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/howtogetstarted/index.html
E. Finding an Executive Sponsor
Critical to the success of a PFAC is finding an executive sponsor, preferably in the C-suite (CEO, COO, COA, etc.). You can look for people who, in the past, exhibited:
You don’t want an executive who is arrogant and likes to hear themselves talk. If you can’t find support in the C-suite, you’ll probably have a more difficult time facilitating a successful PFAC.
F. Identifying the Staff Liaison
Once the executive sponsor is identified, the next step is to find a champion, who will perform the tasks to get a PFAC up and running. This person should have the following characteristics:
G. Developing the Budget
In examining how PFACs have saved hospitals money, it’s also necessary to take a look at what PFACs cost a hospital. In the second survey in November 2014, nearly 50% of respondents have no budget. Slightly over 35 percent do have a budget. Nearly 30 percent indicated one to two full-time employees work with the PFAC, nearly 25 percent said less than one full-time employee and nearly 15 percent said that the PFAC is staffed by volunteers. Another 15 percent indicated that more than two full-time employees staff the PFAC work. Most PFACs operate on a shoestring budget with the only cost of food and drinks for the meetings.
Stanford Hospital and Clinics has found PFACs so beneficial that the hospital hired a program manager. Most of the council meetings are held at night and many of the staff members are exempt employees, so little overtime is necessary. When an advisory council is started, Joan Forte Scott guides the group for six to eight months after which a patient or family member chair is elected and, along with a staff advisor, begins managing the meetings. All the PFACs are linked through the Patient and Family Partner Program Advisory Board which Joan chairs. “Patients and families are our partners in all we do,” she says. (September 2014)
H. Compensating the Members
Opinions are split on whether PFAC members should be paid. Some people believe that paying PFAC members changes the dynamic and they should not be paid. On the other hand, others advocate covering members’ travel costs, paying for babysitters and even paying an honorarium.
I. Creating the Timeline
Creating a PFAC can take anywhere from three months to one year. One of the first tasks is to create the action items required and the timeline.
III. Council Members
Once the support of leadership is attained, the next step in the process is to find the council members.
A. Deciding on the Size
In the Beryl Institute survey conducted in the spring of 2014. Here are the results on the size of PFACs that responded to the survey:
The complete survey results report, PFACs: Where’s the Money? can be found here.
B. Analyzing the Demographics
People should reflect the demographics of the hospital population. Too often council members are retired, White and, oftentimes, women. The hospital should have data on the patients’ demographics, which will help to identify the representative members of the council.
Demographics could include qualities such as:
Certain children’s hospitals have councils with young people as members.
C. Identifying the Ideal Candidate Qualities
One of the goals of identifying council candidates is to reflect the demographics of the community, which the hospital serves. Qualities and skills of patient and family advisors, as identified by the Institute for Patient- and Family-Centered Care, include individuals and families who are able to:
D. Deciding on Parameters
Term Limits
Many PFACs have one or two year term limits. The constant turnover means the council will have new perspectives. However, other PFACs have natural turnover as people leave the council over one or two years and have opted not to have term limits.
Time Commitment
Many PFACs meet once a month for 12 or 10 months of the year, perhaps taking off the summer months. Meetings are usually between one to two hours.
E. Finding Candidates
Ways to find council members include:
GRHealth reaches out to groups in the community, asks interpreters to suggest candidates and reviews patient satisfaction surveys to identify people who fill out the survey in a foreign language. Other hospitals send champions to organizations with members they would like to have on their PFAC.
In the second PFAC survey in 2014, respondents indicated that they had difficulty finding a diverse representation of patients. Several others mentioned that patients and family members can’t commit the time for PFACs that meet during business hours. A few others cited the lack of patient and family member understanding about the PFAC’s role.
F. Using an Application Process
PFAC applicants should fill out a comprehensive application to ensure that candidates are well-suited for the role. In addition to name, address and contact information, applications should contain work and volunteer history. Questions could include:
In an effort to reflect the demographics of the hospital, questions could also include the following: age, gender, ethnicity, languages spoken, sexual orientation, etc. (Check with your legal department to make sure these questions are appropriate.) Another question should ask about the candidate’s experience in the hospital such as hospitalization, emergency room, intensive care unit, etc.
Track the source of applicants to determine which are successful by asking, how did you hear about us?
AHRQ has an example of an application on their website as Word and PDF documents:
http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html
G. Interviewing the Candidates
PFAC candidates should be interviewed individually. Questions can include the same questions in the questionnaire, as well as others such as:
H. Interviewing Departing Members
For candidates who leave on their own, consider interviewing people about the reasons for their departure to understand if there are opportunities for improvement.
IV. The First Meeting
The first meeting is important in that it sets the stage for the successful launch of the PFAC. The meeting room should be comfortable with non-alcoholic drinks and snacks served for a relaxing social atmosphere. Chairs should be arranged so that everyone can see each other. Meetings should always begin and end on time, and should include an agenda that, for subsequent meetings, should be distributed prior to the meeting.
The PFAC hospital liaison should lead off the meeting with welcoming the attendees, introducing themself and describing the purpose of the PFAC. AHRQ has an example of a 31 slide introduction PPT on their website, plus a handout, “Am I Ready to Become an Advisor?” and an orientation manual.
http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html
Next, the chair should ask everyone to introduce themselves, including their professional and personal background and the reason why they are interested in joining the PFAC. The chair’s role is to assess the individuals’ interactions with each other, looking for the qualities identified for ideal candidates.
Next, the chair can distribute the PFAC member job description and ask for a discussion about the qualities.
Finally, the chair should close the meeting, mentioning that formal invitations will be sent out within the week. The debrief after the meeting should include a discussion about each person’s interaction, contribution, and perspective as a council member who will offer constructive suggestions, as opposed to having an axe to grind.
Rather than taking time to sign non-disclosure/confidentiality documents at the meeting, send the documents by email and ask for electronic signature or fax or snail mail. See the AHRQ for a confidentiality form:
http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html
A. Training the Candidates
Most hospitals require HIPAA and confidentiality training for volunteers; however, very little education is offered for PFAC members embarking on their important role. Advisors need to research projects, measure results and publicize the impact. Advisor training should include the following:
B. Creating the Charter
The following is a sample Charter that includes the mission, the vision, the rules that govern the PFAC and the norms, which expected patterns of behavior that every PFAC should develop to guide their meetings.
Norms — Sample norms include:
C. Asking Council Members to Leave:
Occasionally, if a council member is too disruptive or not working out, the person may be asked to leave. AHRQ has an excellent example of language asking an advisor to step down:
http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html
D. Selecting the Chair or Co-Chairs
Most PFACs have a chair or co-chairs that are elected or solicited. One chair may be from the hospital and the other from the council. The meetings may be conducted by the hospital chair or the council chair. In some hospitals, such as Stanford, PFACs are guided by hospital staff for the first six months and then they fly on their own.
V. Projects
A. Establishing Metrics
Despite the unanimous agreement among many individuals that PFACs are important and that they provide valuable contributions, it was difficult in the initial research to find statistics regarding the money a hospital has saved from a PFAC suggestion. In fact, there were a number of people who believe that PFAC ideas should not have a financial component, some suggesting that if hospitals need a business case before involving patients and family members, that a PFAC would not be successful.
Rather, interviewees pointed to industries where consumer research, using surveys, focus groups and other feedback methods, contribute invaluable ideas to companies, who for decades have relied on consumers – both big and small. Disney is legendary for its children’s panels, where children play with toys and games, and watch TV shows and movies. Many companies will only release products and services if they’ve been vetted by the consumer. Yet, hospitals seem to be reluctant to ask their “consumers” questions or obtain feedback.
1. Survey Results
In the Beryl Institute survey conducted in 2014, very few PFACs could point to concrete statistics about the impact, financial or other, that projects have on hospitals.
Based on the survey responses, thriving PFACs are an integral part of hospital efforts, specifically when projects are benchmarked. This includes implementing specific and measurable processes or procedures that can be tracked and followed to determine outcomes and ultimately gauge the level of impact and success. The survey results revealed that having a structure in place for project implementation was a key to success in effective PFAC impact, which can serve as a guiding process for many organizations struggling to establish or accelerate traction with existing efforts.
In the second PFAC survey, participants were asked if they track the return on investment for the PFAC projects. Less than 10% of respondents track the return on investment (ROI). When asked about the amount only two respondents mentioned an amount – 7% and 18%.
2. Sample Metrics
The famous adage, “You can’t manage what you don’t measure,” sums up the value of metrics. Every project should be measured before and after implementation to consistently prove the impact. Metrics can include the following:
Time
One type of measurement is the amount of time a task takes. For example, one hospital engaged a Spanish translator every time a foreign speaking patient needed to fill out a form. The PFAC suggested translating the instructions into Spanish and putting them on the backside of the form. The need for form translators has been eliminated which equates to a specific amount of money saved.
Money
One of the most common forms of measurement is money – the amount spent before and the amount saved after the project implementation.
Amount
Another measurement form is the amount. For example, one PFAC helped solve the hospital’s problem of low test participation by suggesting the percentage of participation be listed as a large thermometer on a sign. Testing participation soared.
Survey Questions for Departments after meeting with PFACs
On a scale of 1 to 5, how would you rate the following (1 = poor, 5 = excellent)
In a few sentences…
B. Identifying Projects
In eary PFACs, council voluteers identified projects; however, more recently projects are brought to the PFAC from departments that want input from the council on initiatives. In the Beryl Institute survey conducted in 2014, respondents indicated the areas where PFACs undertook projects.
C. Operationalizing Projects
One of the challenges that a mature PFAC may face is that projects that have been successfully implemented may not have continued. That’s why it’s important to ensure that all projects are operationalized.
By operationalizing projects, PFACs ensure that their valuable suggestions continue in future years. Operationalization includes writing projects into job descriptions and adding projects to procedure and policy manuals.
For example, one PFAC created sheets with crossword and Sudoku puzzles, available for both adults and children in the waiting areas. After monitoring the amount of sheets taken, the PFAC found that the puzzles were very popular, which helps to improve the perception of wait time. However, a year later the sheets were no longer displayed in any waiting areas.
The problem was that no one was responsible for replenishing the sheets when they were gone. The solution was to operationalize the task by including the assignment in the daily duties of one of the staff.
D. Monitoring Success
Every implemented recommendation should be monitored by the PFAC – immediately after the implementation, quarterly during the first year and then periodically. Some recommendations may be instantly incorporated into the hospital operations or procedures and others may need to be put into a practice where it becomes a consistent process.
E. Reporting Results
Critical to the success of the PFAC, as well as future budget increases and the number of personnel, who work on the PFAC recommendations, is informing senior management about the projects and the results. In Massachusetts, where PFACs are mandated by the legislature, the councils posted their annual report about their projects on their website. Health Care for All had collected many of the reports and posted them on their website until recently. Currently, the Betsy Lehman Center houses the reports. https://betsylehmancenterma.gov/initiatives/pfac-resources/pfac-annual-reports
Reports should include the following:
VI. PFAC Agenda Content
When departments within the hospital seek the PFAC’s advice, feedback and input on their initiatives, they fill out an application form to appear at a PFAC meeting. Form dimensions may include the following:
The meeting usually begins with a department overview and then the reason for soliciting the PFAC’s input. To close the loop, departments return to update the PFAC on the impact of their feedback.
VII. Institution Support
A. Publicizing Results
Publicizing the results of the PFAC projects serves two purposes: first, the publicity informs management about their success and second, it lets departments know that a valuable tool for consumer research resides within their hospitals.
Writing an annual report, as is required in Massachusetts where PFACs are mandated, is one way to publicize the results. Presenting the report at board meetings or management meetings further spreads the word about the PFAC impact.
Some PFACs create their own newsletter and distribute it to employees, including senior leaders, former patients, community leaders, volunteers, nearby physicians’ offices, etc. The newsletter could include the PFACs initiatives, the mission statement, and a story from a PFAC member, success stories, etc.
B. Asking Patients to Join Committees
In addition to joining PFACs, patients and families can participate in hospital committees as well. At many hospitals members participate in a wide array of committees such as quality improvement, bioethics, inpatient service, diversity, patient care evaluation, website, healthcare reform, etc.
In the second PFAC survey, respondents indicated that patients and family members participate on the following committees:
Patient Care or Patient Experience - 57%
Quality - 49%
Safety - 38%
Facilities - 24%
Board of Directors/Trustees or Board Committees - 23%
Bioethics - 19%
Strategic Planning - 16%
Marketing/Communications/Public Relations - 14%
Diversity - 11%
Other involvement included operations, palliative care, research (PCORI grants), LEAN rapid improvement events, patient education and grievances.
Amy Jones, Administrator in the Office of Patient and Family Experience, described the involvement at Vidant Health where patients and family members serve on numerous decision-making and performance improvement committees. “Patient-family advisors are so deeply embedded into our system’s performance improvement work and in decision-making at all levels that we view our outcomes as being achieved in partnership with patient and family advisors. We have realized significant reductions in serious safety events and hospital acquired infections. These results would not have occurred without patient and family advisors working in partnership with us.” (May 2014)
VIII. Recommendations
Based on the research and interviews, here are 10 recommendations for starting and strengthening a successful PFAC.
IX. Resources
The internet provides a plethora of resources for anyone interested in starting or strengthening a PFAC. Some of these resources include the following:
Institute for Patient- and Family- Centered Care https://www.ipfcc.org/bestpractices/patient-and-family-advisory-programs/pfa-resources-and-tools.html
Agency for Healthcare Research and Quality http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html
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